In agony after icp monitoring...

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In agony after icp monitoring...

Postby emmacos » Sun Apr 29, 2012 1:53 pm

Hi All,

My daughter Helen has just had three days of icp monitoring in hospital, and they have found she has low pressure (-9 when sitting up!) She's had a horrendous weekend, and the pain in her head and neck today is excrutiating!

The head pain is a lot worse now since the icp monitoring - has anyone else suffered with this? She is just lying still in hospital with a cold flannel on her forehead and back of her neck, and she cant move or speak because her head hurts so much. She cant sit up to go to the toilet and has asked for a catheter but this has been refused.

Ive never known her in so much pain... morphine is not helping, no pain meds are helping at all...

She is going through a horrendous time at the moment, and the doctors at the hospital are saying they have never known anyone develop low pressure like this 8 yrs after a decompression surgery for chiari malformation. They are still refusing to speak to Graham Flint in Birmingham, who is a specialist NS in this condition, and I'm wondering whether we should just move her to Birmingham so he can treat her. Having said that, at the moment she is in too much pain to be moved, and I dont know whether he would accept her as an inpatient there.

Just don't know what to do at the moment!!! The neuro surgeons here are having a meeting on tuesday and will decide on what they should do next. I can't just leave her laying in agony all day tomorrow!!!!

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